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Author
Topic: Kaletra/Reyataz/Isentress What to do? (Read 9726 times)

Question: I emailed my doctor regarding my concerns with Lypo. Below is part of what he emailed backed to me. Are any of you taking Reyataz or Isentress and having side effects? My counts are doing well with Kaletra and I hate to switch. But Im starting to see some lypo problems and can't figure out if they are associated with the Kaletra or just HiV in general. If I switch then I guess I could possibly just start having other side effects. I wonder what to do.

Doctors response:

"I think that you are right that the Kaletra is contributing to the lipodystrophy. The current information we have indicates that all Protease inhibitors can predispose to fat redistribution. We have two alternatives to Kaletra. One is Reyataz, another Protease Inhibitor. It has less effect on the blood sugar and cholesterol, and it is given once a day instead of twice a day. It needs a small amount of Norvir to boost the level (about the same amount that is in Kaletra, the difference is that with Reyataz it is a separate pill). Side effects are mostly like Kaletra. Rarely there can be rash or kidney stones. Reyataz also can cause elevation of bilirubin, a yellow pigment in the blood. Occasionally, the level gets high enough that it is visibile a condition called jaundice. The major significance is that someone who knows a lot about HIV might figure out that you have HIV because of the jaundice

An alternative is a very newly approved medication called Isentress. Isentress is one pill twice a day. It seems to be very well tolerated. Because it took several years after we had Protease Inhibitors to see the lipodystrophy side effect, it is hard to know 1) whether Istentress has the same side effect or 2) whether it has some other long term side effect. I've started using Isentress in some patients who have no other options. I am a bit hesitant to use it in people like you who are doing well (except for the lipodystrophy) until we have a little more experience"

I just got off of Kaletra and now I am on Reyataz and Novir..also changed combiviar toTruvada...

Hey its a start to something different, which I am really ready for changeBeen on Kaletra and Combiviar for 4 yrs and theres too much happening to my body tocontinue this cocktail...

So I just ordered a different one...

Ask your doctor and you can change what you want with meds..Just make sure youand your doctor go over the change carefully..hope that helps..

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Thanks Ubotts problem is I have become resistant to many of the regimens so I don't have too many choices. My doctor hates to start me on something new if I am still doing well on Kaletra (aside from lypo). It is a catch 22. But I'm not happy with the body changes. I'm glad you were able to switch. I think I'm going to seriously think about this too. I hope the new regimen works for you

But Im starting to see some lypo problems and can't figure out if they are associated with the Kaletra or just HiV in general.

Hey handsome,

On this limited point, allow me to offer my two cents. One way you might figure out whether your lipo symptoms are due to Kaletra or just HIV is to think very hard about exactly when you started to notice the changes. If it was shortly after you started the drug, then it's probably Kaletra. If, however, you'd started seeing any changes before, it could be either HIV infection alone, or a combination of HIV infection and your combo.

I'm not on meds, but I've got pretty bad lipo, and one clue for me was when my friends kept asking me whether I'd lost weight. I thought it was a funny question, because, in fact, I hadn't lost any weight at all, and my pants were no looser. If anything, they were tighter. What tipped me off was all those people, particularly those I hadn't seen in a while, asking the *same* question. So, have your friends been asking you about your weight? And if so, when did they start?

Again, search your mind for anything changes you might have noticed, and try to date them. Thinking back, I now realize that my lipo began very shortly after infection. But it took me a while to put all that together.

DCGUY... I went off Kaletra and onto the following, and there have been no side effects:

Prezista is a new form of PI that is for those of us with resistance issues, and it's assumed that the toxicity levels are VERY low and will not contribute to lipo -- however you must take this with a very small 100mg Norvir booster. You won't get any diarrhea from this. In addition I take Isentress which was just approved one month ago by the FDA, and it also has no side effects and is the new novel class, first of its kind, of integrase inhibitors. I also take Truvada which you may or may not be familiar with. This is the only med that gives me some side effects, though the diarrhea and flatulence are quite dealable -- I mitigate this with a small amount of imodium and and a pancreatic enzyme for absorption issues called Pancrecarb, which if you are on ADAP that should be paid for (though nobody seems to know of it).

Feel free to PM me if you have any further questions -- and we should get together sometime as I'm often in Northern Virginia visiting my parents (Leesburg... which is however a bit of a drive out -- do you live right in the city?)

Thanks for the info and compliments. Just took pic about hour ago. I'm proud of my xmas tree although I personally feel like Im going down the drain. I have to admit all this stuff just makes me want to get drunk pass out and hope when I wake up it will all be a bad dream. But it won't it willl still be there when I wake up. I have some thinkiing to do. Actually I have gained weight. I now way 188 . Too much. But you are right one person asked if I lost weight and another person asked some months ago why my face is getting thinner. I can see changes in my face. Bod is pretty much ok but can see some changes happening. I will review you guys advice and talk to my Doctor again.Between getting older and the Hiv issue it can be frustrating. Thanks again for the feedback. I really appreciate it!

They're regular running shorts not underwear.. but glad you like them ...thanks again for compliment. Let me know when in DC area again. Always looking for friends. Oh yea..see if you can cure this Hiv thing so we can all get off these dam meds

Your doc is not quite right on the Norvir bit of a boosted PI. Kaletra uses 200mg/day of Norvir, Reyataz 100mg. This is important cos Norvir is a significant part of the problem if it's drug-related changes in fat. Also, provided you are not using Truvada/Viread you can do Reyataz without the Norvir if your timing is v good.

Nearly eveyone who starts treatment sees changes in weight.

Putting on weight, well you should see how much energy your body uses fighting and repairing when off treatment, it is no wonder...This is generally controllable by exercise and diet if it's subcutaneous.

Fat loss, and visceral fat gain round organs is not as controllable, and harder to detect. I favour a type of x-ray called a DEXA scan (well you can do MRI etc but why?). Plus blood tests for insulin, glucose and lipids. Pics and othermeasurements have a use but this is a proper diagnostic set of investigations.

On lipids, Reyataz generally has a better track record.

Isentress seems good so far but it is new, and therefore the tarnish (ie side effects profile) will develop.

If on AZT...switching this is an important part of tackling this.

I am surprised the doc hasn't mentioned an NNRTI, or maybe this isn't and option for you.

Bobino is very right about is it/isn't it HIV, and this is a v important point, it can be hard to untangle the cause. There is deffo a genetic component too, like some people are prone to lipodystrophy and some are not.

I favour a type of x-ray called a DEXA scan (well you can do MRI etc but why?). Plus blood tests for insulin, glucose and lipids. Pics and othermeasurements have a use but this is a proper diagnostic set of investigations.

newt,

do you know if there is a correlation between blood lipid levels and lipodystrophy, like the higher the fats, the more likely the lipo?

Hi DC Guy - I just went to my doctor yesterday at Hopkins and asked about Isentress. My regimen includes Kaletra and Truvada. Continue to be undetectable with T's around 400. Stable health but suffer from lipoatrophy as well as lipodystrophy around the waist. Lipo started (then called Crixbelly) when I took Crixivan years ago. Major side effect is diarrhea which I mitigate by eating lots of shredded wheat or similar before taking the Kaletra in the a.m. Lipids are high and blood sugar moderately high despite medication. Reasonable diet and exercise regularly.

My doc gave me the same advice that your doc gave you - almost verbatim. He was concerned about making a switch after doing so well under the Kaletra regimen as well as the fact that is a new drug without a lot of real world experience. After discussing the possibility of a switch, and with my Doc's concurrence, I decided to go with Isentress primarily because of my hope that the diarrhea would be eliminated and the number of other pills related to lipids/blood sugar could reduced. He also told me (at least this is what I think I heard) that Kaletra does not present the same problematic resistance issues that exists with other drugs and that if Isentress did not pan out as expected, I could go back on Kaletra if necessary. In any event, it seemed an easy choice for me. Not only is the lipo and diarrhea bothersome, but I worry about the lipids (and lipo) from a cardiovascular perspective. I can't seem to lower the lipids significantly and strongly believe (from reviewing my pre-1996 protease inhibitor labs) that the high levels are medicinally related. So, I will keep my fingers crossed and hope for some improvement in my lipid numbers. Looks like my insurer will pay and just have to wait for the mail order to be processed.

Fairly new to this site but find it very informative way to get info. Regards to all, Freestate Guy from nearby Columbia Maryland

do you know if there is a correlation between blood lipid levels and lipodystrophy

Yes

Many people see lipo as to do with visible fat changes, eg fat loss in the face and fat gain. This is true, it is, these are the most extreme and visible presentations.

But, considering lipo as a disturbance in fat-glucose metabolism, blood fats - cholesterol, triglycerides, are part of the condition, as is insulin resistance.

Virus + combo + genes = opportunity for buggered fat-glucose metabolism. In many people the fat-glucose bit is the only really noticeable part, and in some ways perhaps more dangerous (even if invisible) because it increase the risk of heart disease, stroke, heart attack, diabetes etc.

There is definitely a genetic element to this, why do some people have dead normal lipids on Kaletra? why did some people (even if a minority) who took Crixivan stay lean and mean? why do some people get a hump on Sustiva? why do some people not lose fat on d4T? why do some people get high tris on Sustiva but not others? why do some people not on meds lose fat, gain fat, show signs of insulin resistance etc etc?

Which is why this forum is called lipodystrophy and metabolic syndrome...

Add in age, diet, smoking, drinking, exercise, (ahem) steroids and their effects and there you have a damn big ballroom of smoke and mirrors.

Exactly what the relationship is no one really knows. My doc seems most interested in fasting glucose levels. When I asked him why he started sommat like "In my experience..." However, he did not go on to say that all his patients with visible body fat changes had abnormal blood glucose, so no news there in my book.

Thanks everyone. Yes I am on Viread too. So will stay on this. The problem is I am already resistant to a lot of the other meds (NNRTI). I have been on meds a while. I will look everyones comments over again and consult with my I.D. Doc. Thanks again. I really appreciate the feedback

Just a follow-up post. Had been on Kaletra and Truvada and switched to Isentress and Truvada notwithstanding being undetectable on the Kaletra. First month after, viral load remained undetectable and I got a little bump on my T's to 457. Highest ever for me since being tested. No side effects thus far and I don't feel medicated in any way. Will test my lipids in a couple months. Hopefully, my lipid levels will return to normal. So far, so good with Isentress.

I am starting Kaletra and Truvada. Just waiting for my chemist to get the Kaletra, then must fetch it, Discuss a few points with the nurse at my health care. then pop pills...

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"When people who are not ready jump in, things can go horribly wrong. For most of us, there is always time to take a deep breath, consider one's options and make a careful, sound decision based on clinical fact, not emotion."MtD

I've been on Sustiva, Ziagen, Epivir for nearly 5 years. I've noticed facial lipoatrophy for some time. It is very slowly progressing. However, my blood work is perfect. It is the envy of most HIV- people my age (51).